By David South
HIV-tainted blood transfusions given in the early 1980s have left some seniors with AIDS, but it is feared many are unaware of their HIV-positive status.
Between 1979 and 1985 – before testing of blood products for HIV became mandatory – 266 transfusion recipients and over 677 hemophiliacs are known to have been infected in Canada, according to the Centre for AIDS Statistics.
But the final numbers are unkown – estimates range from 400 to 1,000 cases of HIV transmission among the 1.5 million Canadians given blood products during this time.
This uncertainty is fueling public concern. With such a serious public health danger, many are shocked by the confusing messages being sent by governments, the Canadian Red Cross Society and hospitals.
But it took the report of an all-party Parliamentary subcommittee on health, released at the end of May, to shock the federal government into calling for a public inquiry into the blood system. The report is highly critical of the decision-making process involved in blood collection and distribution.
“We have members of our group who are seniors,” says Jerry Freise, spokesperson for advocacy organization HIV-BT (Blood Transfusion) Group, whose wife was infected with HIV due to a blood transfusion. “And many of them went for years being misdiagnosed and treated for something other than HIV. Others have gotten sick, and one died without knowing it because nobody told him.
“A classic case is Kenneth Pittman who was infected in 1984. The Red Cross found out in 1985 and they allegedly took two years to tell The Toronto Hospital. The hospital took two years to tell his doctor, and his doctor decided not to tell anybody.
“Another couple, a lady of 59 and a man of 64, called us April 1. She found she was infected, and the reason she took a test is because her husband turned out to be HIV-positive three weeks before a transfusion in 1983. He had gone for years without a diagnosis from doctors.”
This runs counter to the Red Cross’s story.
“Whenever a blood donor tests positive for HIV antibodies, we go back and trace the prior donations,” says spokesperson Angela Prokoptak at the Society’s national office. “The Red Cross supplies blood to hospitals, so we know which units went to which hospital. But the hospital must go through their records to find who they transfused.
“After identifying the recipient, the hospital contacts the recipient’s physician, and then they have them tested. There are of course limitations.
“Since 1987, the Red Cross has been advising people who may be concerned to consult their physician for counselling and advice.”
But subcommitte member Chris Axworthy, an NDP MP, found that hospitals and the Red Cross hesitated to notify former patients for fear of lawsuits. He says the federal government should show some leadership and stop passing the buck to other agencies and departments.
Only two hospitals in Ontario – Toronto’s Hospital for Sick Children and Princess Margaret Hospital – have tried systematically to contact former patients.
Ontario health ministry spokesperson Layne Verbeek says it is a laborious and costly task for hospitals to notify former patients. “We’ve always informed people if they are thought to be at risk, but many hospitals aren’t in the position to trace. If people are at risk or have doubts, they should be tested.”
Verbeek says recent media coverage has caused an increase in the number of people seeking HIV blood tests – requests for the test doubled after the Sick Kids hospital went public. The provincial government’s lab went from 700 tests per day to 1,300, but Verbeek says that has started to taper off.
The ministry of health is happy with the number of people coming forward to be tested, says Verbeek.
But Friese says the different players are more concerned about lawsuits than informing the public. He is especially upset at the Red Cross for not taking a leadership role in disseminating information.
“The Red Cross and the medical system have failed miserably to contact people. Even today they are reticent to tell people they were part of a risk group and should get treated.” Friese feels the various governments and the Red Cross are leaving the job of informing the public to his group and the Canadian Hemophiliacs Society.
Beat the drums
“It’s my job to beat the drums for the media while I’m dealing with my wife being infected? That’s my job, when these are the ministers of health?”, Friese says with anger.
The effect of AIDS on seniors isn’t new to US-based National Institute on Aging researcher Marcia Ory. She and colleagues helped sound the alarm back in 1989 with the book “AIDS In An Aging Society: What We Need To Know.” In the US, over 10 per cent of AIDS cases have occurred in people over 50.
“Surprisingly, people have ignored older people and the AIDS issue,” says Ory. “You had older people in hospitals who might have complained about fatigue which was thought to be age-related. Older people aren’t as likely to be diagnosed as early because of the assumption that they are not at risk from AIDS.
“We don’t want older people in general to be overly fearful, but we want them to acknowledge the possibility, and to engage in good preventative practices if they are at risk.”
Ron deBurger, director of AIDS prevention for the Canadian Public Health Association, would like assurances that the security of the blood supply has improved.
“The subcommittee came to the right conclusion asking for a public inquiry,” says deBurger. “I would hope the terms of reference are broad enough to take a look at the whole issue of the safety of the blood supply, not only in terms of what happened in the past, but, more importantly, what’s happening today.”
Other than hemophiliacs, who require large quantities of blood, deBurger believes anybody who received one transfusion has a small risk. “If you had blood once, I think the odds are pretty long that you are going to end up with tainted blood. But AIDS does take eight to 10 years to manifest itself, and we might still be picking up pieces for the next four to five years that we don’t know about yet.”
Friese recommends that anybody who received blood or blood products between 1979 and 1985 get an HIV test. If their doctor says it isn’t necessary, they should call the AIDS Hotline about anonymous testing.
Anybody who has tested positive for HIV and would like support and counselling can call Robert St-Pierre of the Canadian Hemophilia Society at 1-800-668-2686.
For information on anonymous testing call the Ontario government’s AIDS Hotline in Toronto at 416-392-2437. For support write HIV-BT Group, 257 Eglinton Avenue W., Suite 206, Toronto, Ont., M4R 1B1.
Read more of David South’s 1990s health and medical journalism here: Taking Medicine To The People: Four Innovators In Community Health